Re: New here referred by Wollard

[Guest guest]

Irene & Kim, I just got going through my e-mails here at the library and you had one here too. I haven't looked in Classmates.com s' message board with that Health & Wellness Group as of this writing. But avoivisley Classmates allowed this sort of thing from other website(s). I think they just don't allow people to use their personal e-mail address with their posting with classmates. Tracie may very well sick for awhile now, but she as well as Rose know alot how sarcoid can affect a person. It may have been a couple of years since I had this ACE test myself. I think it was close to normal or not much above normal at that time. It may very well be alot higher with this inflammatary pain in my legs. I have a appt. with a Rhemy Doc in 3 weeks. Irene, you have something in common with my mother. It is your name is the same as my mother's middle name. Irene, there's information in the Archives about different topics related to

Sarcoidosis with this group. Just scroll down to anyone's e-mail a click on where you see "data base", etc. Then on the left side again you click there and this will bring up information. Hope you get feeling better. Kim, somehow or for some reason this idea for to meet with that pastor of this church that you told me about has not taken place. I went there again yesterday and the church was closed up. He did call on Reba's cell phone number when Kathy was using it, but she forgot all about it. It must have been 6 or 7 times I tried to have this resolve and see him and still hasn't taken place. I'll try again after leaving this library this afternoon. Bye, ilambert1957 wrote: I have Neurosarcoidosis allow me to introduce myself- I am Irene. I

am 48 years old originally from Long Island New York and now a resident of North Carolina. I was diagnoised with Neurosarcoidosis in 1994 after having been sick since 1989 and tested with MRI's, CT Scans, all kinds of testing of blood and spinal taps, twice they did a muscle biopsy on my left bicep and my left leg and combined with the constantly elevated ACE Level in my blood determined that I have Neurosarcoidosis. I have NO lung involvement which they thought was very unusual, however with scans and sonograms they have found sarcoids in my liver, kidneys and several other "vital" organs. They wanted to do a lacrimal gland biopsy on my eye and I refused. (I have left optic neuropathy)I flunked the posturography studies, have poor balance and insideous pain in the strangest places at times. Bone, joint and muscle pains and muscle "ticks" on and off. Basically they had given me various meds including seizure medications but I

stopped taking everything except Tylonol about three years ago- none if it was making me feel any better and the seizure meds made me exausted all the time. Does anyone else have a constant low grade fever? I have had a low grade fever of 99.8-100.6 since 1989!! I get brutal migraine headaches about 6-8 times a year and I do take Fiorinal for them if I cant get the Tylonol to ease the pain. I am allergic to any asprin dirivative so no NISADS for me I had been told by various MD's that I couldnt have Neurosarcoidosis because I am white and "it is a black diesase", just goes to show you how much they know!! In case you haven't figured it out yet I have virtually no faith in the medical profession anymore and have decided to leave my fate in the hands of God. I am married and my husband Steve is 54. He was diagnoised with Multiple Sclerosis in July 1989- the same time I was getting sick-talk about a double whammy!! For years I

was told by various Dr's that it was "all in my head" and put on anti depressants until they finally decided to start doing actual testing in 1992 and and started getting all kinds of abnormal results, the neurologist in NY gave me the diagnosis in 94. I have only gone to the Dr here one time and it was a regular MD- I have serious health insurance issues- it cost ME out of pocket $680 for a visit with bloodwork- the insurance company paid a whopping $75 dollars. Anyway she wanted me to follow up with a Neurologist here in NC, but I just dont have that kind of money. My ACE level in November was at 120 which is the lowest it has ever been since the begining when it was at 240-it has been higher at times, does anyone know what "normal" ACE level is??? I would love to hear from others on how they were diagnoised and what they have done to deal with the pain and the multitude of symptoms without anti-inflamatory drugs. Also is

there anyone else in North Carolina?

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[Guest guest]

I have had a constant low grade fever for the last 6+ years. It's the systemic inflammation that keeps the immune system in hyperdrive.

As far as the "blacks" disease--so many of us that are caucasian's wish that we didn't have this, and the blacks wish they were white, because we have an "easier" case of it. You're right the docs are idiots.

There are immunosupressants like Methotrexate, Plaquenil, Imuran, Remicade, etc that may help to get some of that inflammation down. The website WWW.Arthritis.org also lists some other types of meds that help with inflammation. also, the Vitamin Guide in one of the issues lists alot of vitamins and minerals that lower inflammation--(Vit C being a biggie.)

Several of our members have NS but no lung involvement. So, you aren't alone.

I'm sorry to hear that your husband has MS. That too is a horrible disease.

Glad you found us, sorry you had to.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

I have had a constant low grade fever for the last 6+ years. It's the systemic inflammation that keeps the immune system in hyperdrive.

As far as the "blacks" disease--so many of us that are caucasian's wish that we didn't have this, and the blacks wish they were white, because we have an "easier" case of it. You're right the docs are idiots.

There are immunosupressants like Methotrexate, Plaquenil, Imuran, Remicade, etc that may help to get some of that inflammation down. The website WWW.Arthritis.org also lists some other types of meds that help with inflammation. also, the Vitamin Guide in one of the issues lists alot of vitamins and minerals that lower inflammation--(Vit C being a biggie.)

Several of our members have NS but no lung involvement. So, you aren't alone.

I'm sorry to hear that your husband has MS. That too is a horrible disease.

Glad you found us, sorry you had to.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

I have had a constant low grade fever for the last 6+ years. It's the systemic inflammation that keeps the immune system in hyperdrive.

As far as the "blacks" disease--so many of us that are caucasian's wish that we didn't have this, and the blacks wish they were white, because we have an "easier" case of it. You're right the docs are idiots.

There are immunosupressants like Methotrexate, Plaquenil, Imuran, Remicade, etc that may help to get some of that inflammation down. The website WWW.Arthritis.org also lists some other types of meds that help with inflammation. also, the Vitamin Guide in one of the issues lists alot of vitamins and minerals that lower inflammation--(Vit C being a biggie.)

Several of our members have NS but no lung involvement. So, you aren't alone.

I'm sorry to hear that your husband has MS. That too is a horrible disease.

Glad you found us, sorry you had to.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi Irene- sorry u have this awfull illness- it is not

fun- i grew up in Chapel Hill NC_ where are u - they

have great medical services at Univ hospital in Chapel

Hill or Duke Hosp, Matt in Seattle

--- ilambert1957 ilambert@...> wrote:

> I have Neurosarcoidosis allow me to introduce

> myself- I am Irene. I

> am 48 years old originally from Long Island New York

> and now a

> resident of North Carolina. I was diagnoised with

> Neurosarcoidosis in

> 1994 after having been sick since 1989 and tested

> with MRI's, CT

> Scans, all kinds of testing of blood and spinal

> taps, twice they did

> a muscle biopsy on my left bicep and my left leg and

> combined with

> the constantly elevated ACE Level in my blood

> determined that I have

> Neurosarcoidosis. I have NO lung involvement which

> they thought was

> very unusual, however with scans and sonograms they

> have found

> sarcoids in my liver, kidneys and several other

> " vital " organs. They

> wanted to do a lacrimal gland biopsy on my eye and I

> refused. (I have

> left optic neuropathy)I flunked the posturography

> studies, have poor

> balance and insideous pain in the strangest places

> at times. Bone,

> joint and muscle pains and muscle " ticks " on and

> off. Basically they

> had given me various meds including seizure

> medications but I stopped

> taking everything except Tylonol about three years

> ago- none if it

> was making me feel any better and the seizure meds

> made me exausted

> all the time. Does anyone else have a constant low

> grade fever? I

> have had a low grade fever of 99.8-100.6 since

> 1989!! I get brutal

> migraine headaches about 6-8 times a year and I do

> take Fiorinal for

> them if I cant get the Tylonol to ease the pain. I

> am allergic to any

> asprin dirivative so no NISADS for me I had been

> told by various

> MD's that I couldnt have Neurosarcoidosis because I

> am white and " it

> is a black diesase " , just goes to show you how much

> they know!! In

> case you haven't figured it out yet I have virtually

> no faith in the

> medical profession anymore and have decided to leave

> my fate in the

> hands of God. I am married and my husband Steve is

> 54. He was

> diagnoised with Multiple Sclerosis in July 1989- the

> same time I was

> getting sick-talk about a double whammy!! For years

> I was told by

> various Dr's that it was " all in my head " and put on

> anti depressants

> until they finally decided to start doing actual

> testing in 1992 and

> and started getting all kinds of abnormal results,

> the neurologist in

> NY gave me the diagnosis in 94. I have only gone to

> the Dr here one

> time and it was a regular MD- I have serious health

> insurance issues-

> it cost ME out of pocket $680 for a visit with

> bloodwork- the

> insurance company paid a whopping $75 dollars.

> Anyway she wanted me

> to follow up with a Neurologist here in NC, but I

> just dont have that

> kind of money. My ACE level in November was at 120

> which is the

> lowest it has ever been since the begining when it

> was at 240-it has

> been higher at times, does anyone know what " normal "

> ACE level is???

> I would love to hear from others on how they were

> diagnoised and what

> they have done to deal with the pain and the

> multitude of symptoms

> without anti-inflamatory drugs. Also is there anyone

> else in North

> Carolina?

>

>

>

>

__________________________________________________

[Guest guest]

Hi Matt, I live in Sneads Ferry NC on the coast about an hour north

of Wilmington. Irene

>

> > I have Neurosarcoidosis allow me to introduce

> > myself- I am Irene. I

> > am 48 years old originally from Long Island New York

> > and now a

> > resident of North Carolina. I was diagnoised with

> > Neurosarcoidosis in

> > 1994 after having been sick since 1989 and tested

> > with MRI's, CT

> > Scans, all kinds of testing of blood and spinal

> > taps, twice they did

> > a muscle biopsy on my left bicep and my left leg and

> > combined with

> > the constantly elevated ACE Level in my blood

> > determined that I have

> > Neurosarcoidosis. I have NO lung involvement which

> > they thought was

> > very unusual, however with scans and sonograms they

> > have found

> > sarcoids in my liver, kidneys and several other

> > " vital " organs. They

> > wanted to do a lacrimal gland biopsy on my eye and I

> > refused. (I have

> > left optic neuropathy)I flunked the posturography

> > studies, have poor

> > balance and insideous pain in the strangest places

> > at times. Bone,

> > joint and muscle pains and muscle " ticks " on and

> > off. Basically they

> > had given me various meds including seizure

> > medications but I stopped

> > taking everything except Tylonol about three years

> > ago- none if it

> > was making me feel any better and the seizure meds

> > made me exausted

> > all the time. Does anyone else have a constant low

> > grade fever? I

> > have had a low grade fever of 99.8-100.6 since

> > 1989!! I get brutal

> > migraine headaches about 6-8 times a year and I do

> > take Fiorinal for

> > them if I cant get the Tylonol to ease the pain. I

> > am allergic to any

> > asprin dirivative so no NISADS for me I had been

> > told by various

> > MD's that I couldnt have Neurosarcoidosis because I

> > am white and " it

> > is a black diesase " , just goes to show you how much

> > they know!! In

> > case you haven't figured it out yet I have virtually

> > no faith in the

> > medical profession anymore and have decided to leave

> > my fate in the

> > hands of God. I am married and my husband Steve is

> > 54. He was

> > diagnoised with Multiple Sclerosis in July 1989- the

> > same time I was

> > getting sick-talk about a double whammy!! For years

> > I was told by

> > various Dr's that it was " all in my head " and put on

> > anti depressants

> > until they finally decided to start doing actual

> > testing in 1992 and

> > and started getting all kinds of abnormal results,

> > the neurologist in

> > NY gave me the diagnosis in 94. I have only gone to

> > the Dr here one

> > time and it was a regular MD- I have serious health

> > insurance issues-

> > it cost ME out of pocket $680 for a visit with

> > bloodwork- the

> > insurance company paid a whopping $75 dollars.

> > Anyway she wanted me

> > to follow up with a Neurologist here in NC, but I

> > just dont have that

> > kind of money. My ACE level in November was at 120

> > which is the

> > lowest it has ever been since the begining when it

> > was at 240-it has

> > been higher at times, does anyone know what " normal "

> > ACE level is???

> > I would love to hear from others on how they were

> > diagnoised and what

> > they have done to deal with the pain and the

> > multitude of symptoms

> > without anti-inflamatory drugs. Also is there anyone

> > else in North

> > Carolina?

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi Matt, I live in Sneads Ferry NC on the coast about an hour north

of Wilmington. Irene

>

> > I have Neurosarcoidosis allow me to introduce

> > myself- I am Irene. I

> > am 48 years old originally from Long Island New York

> > and now a

> > resident of North Carolina. I was diagnoised with

> > Neurosarcoidosis in

> > 1994 after having been sick since 1989 and tested

> > with MRI's, CT

> > Scans, all kinds of testing of blood and spinal

> > taps, twice they did

> > a muscle biopsy on my left bicep and my left leg and

> > combined with

> > the constantly elevated ACE Level in my blood

> > determined that I have

> > Neurosarcoidosis. I have NO lung involvement which

> > they thought was

> > very unusual, however with scans and sonograms they

> > have found

> > sarcoids in my liver, kidneys and several other

> > " vital " organs. They

> > wanted to do a lacrimal gland biopsy on my eye and I

> > refused. (I have

> > left optic neuropathy)I flunked the posturography

> > studies, have poor

> > balance and insideous pain in the strangest places

> > at times. Bone,

> > joint and muscle pains and muscle " ticks " on and

> > off. Basically they

> > had given me various meds including seizure

> > medications but I stopped

> > taking everything except Tylonol about three years

> > ago- none if it

> > was making me feel any better and the seizure meds

> > made me exausted

> > all the time. Does anyone else have a constant low

> > grade fever? I

> > have had a low grade fever of 99.8-100.6 since

> > 1989!! I get brutal

> > migraine headaches about 6-8 times a year and I do

> > take Fiorinal for

> > them if I cant get the Tylonol to ease the pain. I

> > am allergic to any

> > asprin dirivative so no NISADS for me I had been

> > told by various

> > MD's that I couldnt have Neurosarcoidosis because I

> > am white and " it

> > is a black diesase " , just goes to show you how much

> > they know!! In

> > case you haven't figured it out yet I have virtually

> > no faith in the

> > medical profession anymore and have decided to leave

> > my fate in the

> > hands of God. I am married and my husband Steve is

> > 54. He was

> > diagnoised with Multiple Sclerosis in July 1989- the

> > same time I was

> > getting sick-talk about a double whammy!! For years

> > I was told by

> > various Dr's that it was " all in my head " and put on

> > anti depressants

> > until they finally decided to start doing actual

> > testing in 1992 and

> > and started getting all kinds of abnormal results,

> > the neurologist in

> > NY gave me the diagnosis in 94. I have only gone to

> > the Dr here one

> > time and it was a regular MD- I have serious health

> > insurance issues-

> > it cost ME out of pocket $680 for a visit with

> > bloodwork- the

> > insurance company paid a whopping $75 dollars.

> > Anyway she wanted me

> > to follow up with a Neurologist here in NC, but I

> > just dont have that

> > kind of money. My ACE level in November was at 120

> > which is the

> > lowest it has ever been since the begining when it

> > was at 240-it has

> > been higher at times, does anyone know what " normal "

> > ACE level is???

> > I would love to hear from others on how they were

> > diagnoised and what

> > they have done to deal with the pain and the

> > multitude of symptoms

> > without anti-inflamatory drugs. Also is there anyone

> > else in North

> > Carolina?

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi Matt, I live in Sneads Ferry NC on the coast about an hour north

of Wilmington. Irene

>

> > I have Neurosarcoidosis allow me to introduce

> > myself- I am Irene. I

> > am 48 years old originally from Long Island New York

> > and now a

> > resident of North Carolina. I was diagnoised with

> > Neurosarcoidosis in

> > 1994 after having been sick since 1989 and tested

> > with MRI's, CT

> > Scans, all kinds of testing of blood and spinal

> > taps, twice they did

> > a muscle biopsy on my left bicep and my left leg and

> > combined with

> > the constantly elevated ACE Level in my blood

> > determined that I have

> > Neurosarcoidosis. I have NO lung involvement which

> > they thought was

> > very unusual, however with scans and sonograms they

> > have found

> > sarcoids in my liver, kidneys and several other

> > " vital " organs. They

> > wanted to do a lacrimal gland biopsy on my eye and I

> > refused. (I have

> > left optic neuropathy)I flunked the posturography

> > studies, have poor

> > balance and insideous pain in the strangest places

> > at times. Bone,

> > joint and muscle pains and muscle " ticks " on and

> > off. Basically they

> > had given me various meds including seizure

> > medications but I stopped

> > taking everything except Tylonol about three years

> > ago- none if it

> > was making me feel any better and the seizure meds

> > made me exausted

> > all the time. Does anyone else have a constant low

> > grade fever? I

> > have had a low grade fever of 99.8-100.6 since

> > 1989!! I get brutal

> > migraine headaches about 6-8 times a year and I do

> > take Fiorinal for

> > them if I cant get the Tylonol to ease the pain. I

> > am allergic to any

> > asprin dirivative so no NISADS for me I had been

> > told by various

> > MD's that I couldnt have Neurosarcoidosis because I

> > am white and " it

> > is a black diesase " , just goes to show you how much

> > they know!! In

> > case you haven't figured it out yet I have virtually

> > no faith in the

> > medical profession anymore and have decided to leave

> > my fate in the

> > hands of God. I am married and my husband Steve is

> > 54. He was

> > diagnoised with Multiple Sclerosis in July 1989- the

> > same time I was

> > getting sick-talk about a double whammy!! For years

> > I was told by

> > various Dr's that it was " all in my head " and put on

> > anti depressants

> > until they finally decided to start doing actual

> > testing in 1992 and

> > and started getting all kinds of abnormal results,

> > the neurologist in

> > NY gave me the diagnosis in 94. I have only gone to

> > the Dr here one

> > time and it was a regular MD- I have serious health

> > insurance issues-

> > it cost ME out of pocket $680 for a visit with

> > bloodwork- the

> > insurance company paid a whopping $75 dollars.

> > Anyway she wanted me

> > to follow up with a Neurologist here in NC, but I

> > just dont have that

> > kind of money. My ACE level in November was at 120

> > which is the

> > lowest it has ever been since the begining when it

> > was at 240-it has

> > been higher at times, does anyone know what " normal "

> > ACE level is???

> > I would love to hear from others on how they were

> > diagnoised and what

> > they have done to deal with the pain and the

> > multitude of symptoms

> > without anti-inflamatory drugs. Also is there anyone

> > else in North

> > Carolina?

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi Tracie,

Thank you for the welcome to the group. It drives me crazy sometimes

to have this annoying fever all the time, but I just deal with it as

best I can, I find myself wetting my head down a lot especially in

the summer. Because I am allergic to asprin and some of the most

commonly used antibiotics, its really terribly when I get any kind of

infection.Its really great to find other people out there that have

the same problems with this disease, I have a VERY unsupportive

family-my mother still doesn't believe I am actually ill,despite all

of the abnormal tests and results!! And with my husband sick too its

really tough sometimes.I have never met anyone else that has NS

before although my Neuro in NY wanted me to travel the s Hopkins

in MD to see the specialists there, I had no way to ever afford that.

He had told me that I would meet a room full of people that were just

like me with all of the same porblems and symptoms. After so many

years of being treated as if I was crazy- it was almost a relief to

finally have a " name " put to what my regular MD had begun to refer to

as the " mystery disease " , although he did believe I had an illness

and it wasn't all " in my head " , he didnt have access to the kinds of

tests that were eventually done. He worked in a county health clinic

for people without insurance that weren't able to get medicaid. I

think so many people in this country fall through the cracks as far

as insurance goes its pitiful.I dont want to drag on here, I'm really

a very upbeat person and dont usually do the " pity party " thing.

Again I thank you for the welcome and I too wish none of us had this

illness. Irene

>

> I have had a constant low grade fever for the last 6+ years. It's

the

> systemic inflammation that keeps the immune system in hyperdrive.

> As far as the " blacks " disease--so many of us that are caucasian's

wish that

> we didn't have this, and the blacks wish they were white, because

we have an

> " easier " case of it. You're right the docs are idiots.

> There are immunosupressants like Methotrexate, Plaquenil, Imuran,

Remicade,

> etc that may help to get some of that inflammation down. The

website

> WWW.Arthritis.org also lists some other types of meds that help

with inflammation.

> also, the Vitamin Guide in one of the issues lists alot of vitamins

and minerals

> that lower inflammation--(Vit C being a biggie.)

> Several of our members have NS but no lung involvement. So, you

aren't

> alone.

> I'm sorry to hear that your husband has MS. That too is a horrible

disease.

>

>

> Glad you found us, sorry you had to.

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Hi Tracie,

Thank you for the welcome to the group. It drives me crazy sometimes

to have this annoying fever all the time, but I just deal with it as

best I can, I find myself wetting my head down a lot especially in

the summer. Because I am allergic to asprin and some of the most

commonly used antibiotics, its really terribly when I get any kind of

infection.Its really great to find other people out there that have

the same problems with this disease, I have a VERY unsupportive

family-my mother still doesn't believe I am actually ill,despite all

of the abnormal tests and results!! And with my husband sick too its

really tough sometimes.I have never met anyone else that has NS

before although my Neuro in NY wanted me to travel the s Hopkins

in MD to see the specialists there, I had no way to ever afford that.

He had told me that I would meet a room full of people that were just

like me with all of the same porblems and symptoms. After so many

years of being treated as if I was crazy- it was almost a relief to

finally have a " name " put to what my regular MD had begun to refer to

as the " mystery disease " , although he did believe I had an illness

and it wasn't all " in my head " , he didnt have access to the kinds of

tests that were eventually done. He worked in a county health clinic

for people without insurance that weren't able to get medicaid. I

think so many people in this country fall through the cracks as far

as insurance goes its pitiful.I dont want to drag on here, I'm really

a very upbeat person and dont usually do the " pity party " thing.

Again I thank you for the welcome and I too wish none of us had this

illness. Irene

>

> I have had a constant low grade fever for the last 6+ years. It's

the

> systemic inflammation that keeps the immune system in hyperdrive.

> As far as the " blacks " disease--so many of us that are caucasian's

wish that

> we didn't have this, and the blacks wish they were white, because

we have an

> " easier " case of it. You're right the docs are idiots.

> There are immunosupressants like Methotrexate, Plaquenil, Imuran,

Remicade,

> etc that may help to get some of that inflammation down. The

website

> WWW.Arthritis.org also lists some other types of meds that help

with inflammation.

> also, the Vitamin Guide in one of the issues lists alot of vitamins

and minerals

> that lower inflammation--(Vit C being a biggie.)

> Several of our members have NS but no lung involvement. So, you

aren't

> alone.

> I'm sorry to hear that your husband has MS. That too is a horrible

disease.

>

>

> Glad you found us, sorry you had to.

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Hi Tracie,

Thank you for the welcome to the group. It drives me crazy sometimes

to have this annoying fever all the time, but I just deal with it as

best I can, I find myself wetting my head down a lot especially in

the summer. Because I am allergic to asprin and some of the most

commonly used antibiotics, its really terribly when I get any kind of

infection.Its really great to find other people out there that have

the same problems with this disease, I have a VERY unsupportive

family-my mother still doesn't believe I am actually ill,despite all

of the abnormal tests and results!! And with my husband sick too its

really tough sometimes.I have never met anyone else that has NS

before although my Neuro in NY wanted me to travel the s Hopkins

in MD to see the specialists there, I had no way to ever afford that.

He had told me that I would meet a room full of people that were just

like me with all of the same porblems and symptoms. After so many

years of being treated as if I was crazy- it was almost a relief to

finally have a " name " put to what my regular MD had begun to refer to

as the " mystery disease " , although he did believe I had an illness

and it wasn't all " in my head " , he didnt have access to the kinds of

tests that were eventually done. He worked in a county health clinic

for people without insurance that weren't able to get medicaid. I

think so many people in this country fall through the cracks as far

as insurance goes its pitiful.I dont want to drag on here, I'm really

a very upbeat person and dont usually do the " pity party " thing.

Again I thank you for the welcome and I too wish none of us had this

illness. Irene

>

> I have had a constant low grade fever for the last 6+ years. It's

the

> systemic inflammation that keeps the immune system in hyperdrive.

> As far as the " blacks " disease--so many of us that are caucasian's

wish that

> we didn't have this, and the blacks wish they were white, because

we have an

> " easier " case of it. You're right the docs are idiots.

> There are immunosupressants like Methotrexate, Plaquenil, Imuran,

Remicade,

> etc that may help to get some of that inflammation down. The

website

> WWW.Arthritis.org also lists some other types of meds that help

with inflammation.

> also, the Vitamin Guide in one of the issues lists alot of vitamins

and minerals

> that lower inflammation--(Vit C being a biggie.)

> Several of our members have NS but no lung involvement. So, you

aren't

> alone.

> I'm sorry to hear that your husband has MS. That too is a horrible

disease.

>

>

> Glad you found us, sorry you had to.

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Irene, & Misc., Irene, you must found out this group by chance, luck, or prayer. At the time I had written a e-mail, I didn't go over to Classmates.com and seen what I had written about this group's e-mail address. Tracie, I had written down the e-mail address you or Darlene started (up in that To: box above) in that e-mail with Classmates.com on their Health & Wellness information "board" and this Classmates organization ERASED IT! I had stated that this is where a person can find information regarding this sarcoid, tests, etc. and they did what they did. I had stated health websites (I believe 2) that doctors discuss about sarcoid and they DIDN'T ERASED IT!!!!! It just doesn't make any sense at all. I had paid for a year's service to them this past September, 2005 and whether or not I'll continue with this is uncertain now. I had very little success from people in my high school class that did respond in this

Classmates.com but with these type of groups there have been more success. Irene, you said that you haven't got support from your family. Well Kim, with this group and I think others have said this and I have experience this too. Misc. I'am finally going to see a rhemy doc about this pain in my legs 3 weeks from tomorrow. If this is the same fruitcake rhemy doc that I seen at the V.A. clinic, he should at least approve an MRI on my legs if he is reluctant to I have that Radium 67 Scan (supposevly harmless radioactive dye injected in the body & take x-rays two days latter). Kathy is to have surgery regarding this Cholestealtoma in that right ear of hers on March 31st. She probility be in bed except going to the bathroom for at least 2 months. (alias - switcheroo again) P.S. If everyone started using their middle names, would there mass hysteria brain twister & brain

computer melfuntion breakdown???????? You know I've been moody these past months, and I'am just ty little mischievous humorist now.ilambert1957 wrote: Hi Tracie,Thank you for the welcome to the group. It drives me crazy sometimes to have this annoying fever all the time, but I just deal with it as best I can, I find myself wetting my head down a lot especially in the summer. Because I am allergic to asprin and some of the most commonly used antibiotics, its really terribly when I get any kind of infection.Its really great to find other people out there that have the same problems with this disease, I have a VERY unsupportive family-my mother still doesn't believe I am actually ill,despite all of the abnormal tests and results!! And with my husband sick too its really

tough sometimes.I have never met anyone else that has NS before although my Neuro in NY wanted me to travel the s Hopkins in MD to see the specialists there, I had no way to ever afford that. He had told me that I would meet a room full of people that were just like me with all of the same porblems and symptoms. After so many years of being treated as if I was crazy- it was almost a relief to finally have a "name" put to what my regular MD had begun to refer to as the "mystery disease", although he did believe I had an illness and it wasn't all "in my head", he didnt have access to the kinds of tests that were eventually done. He worked in a county health clinic for people without insurance that weren't able to get medicaid. I think so many people in this country fall through the cracks as far as insurance goes its pitiful.I dont want to drag on here, I'm really a very upbeat person and dont usually do the "pity party" thing.

Again I thank you for the welcome and I too wish none of us had this illness. Irene >> I have had a constant low grade fever for the last 6+ years. It's the > systemic inflammation that keeps the immune system in hyperdrive. > As far as the "blacks" disease--so many of us that are caucasian's wish that > we didn't have this, and the blacks wish they were white, because we have an > "easier" case of it. You're right the docs are idiots.> There are immunosupressants like Methotrexate, Plaquenil, Imuran, Remicade, > etc that may help to get some of that inflammation down. The website > WWW.Arthritis.org also lists some other types of meds that help with inflammation. > also, the Vitamin Guide in one of the issues lists alot of vitamins and minerals > that lower inflammation--(Vit C

being a biggie.) > Several of our members have NS but no lung involvement. So, you aren't > alone. > I'm sorry to hear that your husband has MS. That too is a horrible disease. > > > Glad you found us, sorry you had to.> Sincerely,> Tracie> NS Co-owner/moderator>

Yahoo! Mail Use Photomail to share photos without annoying attachments.

[Guest guest]

Irene, & Misc., Irene, you must found out this group by chance, luck, or prayer. At the time I had written a e-mail, I didn't go over to Classmates.com and seen what I had written about this group's e-mail address. Tracie, I had written down the e-mail address you or Darlene started (up in that To: box above) in that e-mail with Classmates.com on their Health & Wellness information "board" and this Classmates organization ERASED IT! I had stated that this is where a person can find information regarding this sarcoid, tests, etc. and they did what they did. I had stated health websites (I believe 2) that doctors discuss about sarcoid and they DIDN'T ERASED IT!!!!! It just doesn't make any sense at all. I had paid for a year's service to them this past September, 2005 and whether or not I'll continue with this is uncertain now. I had very little success from people in my high school class that did respond in this

Classmates.com but with these type of groups there have been more success. Irene, you said that you haven't got support from your family. Well Kim, with this group and I think others have said this and I have experience this too. Misc. I'am finally going to see a rhemy doc about this pain in my legs 3 weeks from tomorrow. If this is the same fruitcake rhemy doc that I seen at the V.A. clinic, he should at least approve an MRI on my legs if he is reluctant to I have that Radium 67 Scan (supposevly harmless radioactive dye injected in the body & take x-rays two days latter). Kathy is to have surgery regarding this Cholestealtoma in that right ear of hers on March 31st. She probility be in bed except going to the bathroom for at least 2 months. (alias - switcheroo again) P.S. If everyone started using their middle names, would there mass hysteria brain twister & brain

computer melfuntion breakdown???????? You know I've been moody these past months, and I'am just ty little mischievous humorist now.ilambert1957 wrote: Hi Tracie,Thank you for the welcome to the group. It drives me crazy sometimes to have this annoying fever all the time, but I just deal with it as best I can, I find myself wetting my head down a lot especially in the summer. Because I am allergic to asprin and some of the most commonly used antibiotics, its really terribly when I get any kind of infection.Its really great to find other people out there that have the same problems with this disease, I have a VERY unsupportive family-my mother still doesn't believe I am actually ill,despite all of the abnormal tests and results!! And with my husband sick too its really

tough sometimes.I have never met anyone else that has NS before although my Neuro in NY wanted me to travel the s Hopkins in MD to see the specialists there, I had no way to ever afford that. He had told me that I would meet a room full of people that were just like me with all of the same porblems and symptoms. After so many years of being treated as if I was crazy- it was almost a relief to finally have a "name" put to what my regular MD had begun to refer to as the "mystery disease", although he did believe I had an illness and it wasn't all "in my head", he didnt have access to the kinds of tests that were eventually done. He worked in a county health clinic for people without insurance that weren't able to get medicaid. I think so many people in this country fall through the cracks as far as insurance goes its pitiful.I dont want to drag on here, I'm really a very upbeat person and dont usually do the "pity party" thing.

Again I thank you for the welcome and I too wish none of us had this illness. Irene >> I have had a constant low grade fever for the last 6+ years. It's the > systemic inflammation that keeps the immune system in hyperdrive. > As far as the "blacks" disease--so many of us that are caucasian's wish that > we didn't have this, and the blacks wish they were white, because we have an > "easier" case of it. You're right the docs are idiots.> There are immunosupressants like Methotrexate, Plaquenil, Imuran, Remicade, > etc that may help to get some of that inflammation down. The website > WWW.Arthritis.org also lists some other types of meds that help with inflammation. > also, the Vitamin Guide in one of the issues lists alot of vitamins and minerals > that lower inflammation--(Vit C

being a biggie.) > Several of our members have NS but no lung involvement. So, you aren't > alone. > I'm sorry to hear that your husband has MS. That too is a horrible disease. > > > Glad you found us, sorry you had to.> Sincerely,> Tracie> NS Co-owner/moderator>

Yahoo! Mail Use Photomail to share photos without annoying attachments.

[Guest guest]

Irene, & Misc., Irene, you must found out this group by chance, luck, or prayer. At the time I had written a e-mail, I didn't go over to Classmates.com and seen what I had written about this group's e-mail address. Tracie, I had written down the e-mail address you or Darlene started (up in that To: box above) in that e-mail with Classmates.com on their Health & Wellness information "board" and this Classmates organization ERASED IT! I had stated that this is where a person can find information regarding this sarcoid, tests, etc. and they did what they did. I had stated health websites (I believe 2) that doctors discuss about sarcoid and they DIDN'T ERASED IT!!!!! It just doesn't make any sense at all. I had paid for a year's service to them this past September, 2005 and whether or not I'll continue with this is uncertain now. I had very little success from people in my high school class that did respond in this

Classmates.com but with these type of groups there have been more success. Irene, you said that you haven't got support from your family. Well Kim, with this group and I think others have said this and I have experience this too. Misc. I'am finally going to see a rhemy doc about this pain in my legs 3 weeks from tomorrow. If this is the same fruitcake rhemy doc that I seen at the V.A. clinic, he should at least approve an MRI on my legs if he is reluctant to I have that Radium 67 Scan (supposevly harmless radioactive dye injected in the body & take x-rays two days latter). Kathy is to have surgery regarding this Cholestealtoma in that right ear of hers on March 31st. She probility be in bed except going to the bathroom for at least 2 months. (alias - switcheroo again) P.S. If everyone started using their middle names, would there mass hysteria brain twister & brain

computer melfuntion breakdown???????? You know I've been moody these past months, and I'am just ty little mischievous humorist now.ilambert1957 wrote: Hi Tracie,Thank you for the welcome to the group. It drives me crazy sometimes to have this annoying fever all the time, but I just deal with it as best I can, I find myself wetting my head down a lot especially in the summer. Because I am allergic to asprin and some of the most commonly used antibiotics, its really terribly when I get any kind of infection.Its really great to find other people out there that have the same problems with this disease, I have a VERY unsupportive family-my mother still doesn't believe I am actually ill,despite all of the abnormal tests and results!! And with my husband sick too its really

tough sometimes.I have never met anyone else that has NS before although my Neuro in NY wanted me to travel the s Hopkins in MD to see the specialists there, I had no way to ever afford that. He had told me that I would meet a room full of people that were just like me with all of the same porblems and symptoms. After so many years of being treated as if I was crazy- it was almost a relief to finally have a "name" put to what my regular MD had begun to refer to as the "mystery disease", although he did believe I had an illness and it wasn't all "in my head", he didnt have access to the kinds of tests that were eventually done. He worked in a county health clinic for people without insurance that weren't able to get medicaid. I think so many people in this country fall through the cracks as far as insurance goes its pitiful.I dont want to drag on here, I'm really a very upbeat person and dont usually do the "pity party" thing.

Again I thank you for the welcome and I too wish none of us had this illness. Irene >> I have had a constant low grade fever for the last 6+ years. It's the > systemic inflammation that keeps the immune system in hyperdrive. > As far as the "blacks" disease--so many of us that are caucasian's wish that > we didn't have this, and the blacks wish they were white, because we have an > "easier" case of it. You're right the docs are idiots.> There are immunosupressants like Methotrexate, Plaquenil, Imuran, Remicade, > etc that may help to get some of that inflammation down. The website > WWW.Arthritis.org also lists some other types of meds that help with inflammation. > also, the Vitamin Guide in one of the issues lists alot of vitamins and minerals > that lower inflammation--(Vit C

being a biggie.) > Several of our members have NS but no lung involvement. So, you aren't > alone. > I'm sorry to hear that your husband has MS. That too is a horrible disease. > > > Glad you found us, sorry you had to.> Sincerely,> Tracie> NS Co-owner/moderator>

Yahoo! Mail Use Photomail to share photos without annoying attachments.

[Guest guest]

/, if we all started using other names, it would send some of us over the rainbow. I have enough trouble remembering everybody now! My middle name is Joan, pronounced Jo-ann. My first name is actually Roselynn. My parents were friends with a couple name Rose & Lynn, so there you are. Years ago I tried to get people to call me Lynn, but I guess they were too set in their ways.

I'm glad to see you back to your humorous ways. And I appreciate the way you helped one of the newbies find the archives & links.

Ramblin' Rose

Moderator Planning a trip for Spring Break? See the area before you go

[Guest guest]

/, if we all started using other names, it would send some of us over the rainbow. I have enough trouble remembering everybody now! My middle name is Joan, pronounced Jo-ann. My first name is actually Roselynn. My parents were friends with a couple name Rose & Lynn, so there you are. Years ago I tried to get people to call me Lynn, but I guess they were too set in their ways.

I'm glad to see you back to your humorous ways. And I appreciate the way you helped one of the newbies find the archives & links.

Ramblin' Rose

Moderator Planning a trip for Spring Break? See the area before you go

[Guest guest]

/, if we all started using other names, it would send some of us over the rainbow. I have enough trouble remembering everybody now! My middle name is Joan, pronounced Jo-ann. My first name is actually Roselynn. My parents were friends with a couple name Rose & Lynn, so there you are. Years ago I tried to get people to call me Lynn, but I guess they were too set in their ways.

I'm glad to see you back to your humorous ways. And I appreciate the way you helped one of the newbies find the archives & links.

Ramblin' Rose

Moderator Planning a trip for Spring Break? See the area before you go